Our Special Kids

Lee

"My name is Lee and I have 2 beautiful children, Asialee (6 years), Brodie (5 years) and Charlize (2 years) and they are my joy and inspiration."

Asialee

Asialee is now 6 years old.

Asialee’s Journey

Asialee had a seizure several hours after birth, leaving her with severe encephaly (brain damage)
affecting her motor (muscle) control. Paediatricians’ didn’t expect Asialee to survive longer than 3 hours as she had lost her innate suckle/swallow and control over her facial muscles (and was unable to drink) and they were not confident she could manage her airways and breathing. She had such high muscle tone her limbs appeared paralysed for 6 months. Asialee missed many milestones smiling, rolling, head control, sitting, crawling, standing, walking, babbling and talking. At around 6 mths she was diagnosed with Cerebral Palsy (Quadriparetic, Dyskinetic – Spastic type that affects all limbs) as well as Congenital Hip Dysplasia.

Therapies & Learning Techniques Asialee has tried:

Acupuncture – Age 4 days to 2 mths (assisted development of Suckle & Swallow- drinking)

G-Therapy – Age 24mths to 27mths (assisted clear excess drooling) Again at age 3 years

Hydrotherapy – Age 18mths to current on occasion (assists muscle relaxation and physio sessions)

Asialee has lived through complex feeding difficulties (life began by eating 10ml of breast milk a day fed by an eye dropper and over time she learnt to feed from a bottle until she lost her baby suckle reflex then she spent a year receiving most of her food via naso-gastric tube). Now she can drink fluids from a cup (held by a carer), and is learning to chew foods!

She has also faced severe reflux (where she was vomiting up to 8 times a day for months) as a
consequence of her brain injury. She is a stubborn little girl and seems to have moved through the reflux recently (hasn’t vomited for around 2 months).

Asialee has also been challenged by aspiration – where some of her food/drink intake goes down the wrong way into her lungs. She still aspirates much of the food she eats, so we need to take care that she masters her cough reflex and that her immune system is healthy to prevent aspiration pneumonia.

Now

Asialee’s journey has been full of challenges and along the way there has been a lot of heartache (for us as parents). As her parents, we have always believed in offering Asialee every opportunity we could and giving her access to living a life she loves. Asialee is an amazing little girl who is very stubborn and wants to give anything a go and she shares our belief that anything is possible…

Asialee is now able to express all her needs despite being mostly non-verbal; she can play independently (and with her brother, cousins and peers). Learn: that is comprehend and express language despite being mostly non-verbal, use electronic and computerised equipment (despite her severe spasticity) which enables her to read books, switch on lights / TV / radio and express her needs through pre-recorded messages and complex computerized technology.

She has equipment that supports all her postural, learning, mobility and communication needs (as she is still unable to sit, stand, walk, talk without assistance).

Asialee’s self expression, independent play, ability to learn and mastery of her severe spasticity has resulted in her happiness, healthy self esteem and enjoyment of play with others.

Whilst she lives with many complex needs, she lives a life where she is understood and included and has fun being a kid.

Brodie

Brodie is a loving brother and son, and being 2 years old is very adventurous, curious and fearless! He loves singing and playing with his elder sister (Asialee) and it is very beautiful for us to see the sibling bond.

We have raised him to know a life with no bounds and he enjoys playing, sharing toys and
communicating with his sister and loves using her equipment and participating in the stretching and play therapy. He equally enjoys exploring his environment independently.

At times he gets a little frustrated that Asialee doesn’t throw the ball back, but for the most part he gets pleasure from giving her the ball and seeing the smile this puts on her face!

Brodie is an action man so when we are spending time feeding Asialee and doing her stretches, he
naturally wants to get involved. In the beginning feeding time was frustrating, messy and unworkable but over time we have found ways to include Brodie and now he has a ball.

Brodie has learnt patience and perseverance from Asialee and she has learnt courage and sharing from him.

Having children with different needs and abilities has brought (and will continue to bring) challenges, however at the end of the day all our kids want is to be heard, included and loved so its up to us to find ways to make this happen and we are strong believers that there is always a way!

Charmaine

"My name is Charmaine and my husband and I are proud parents of our beautiful son Jack, who is 4 years old."

Jack

Jack is under medical investigation for a Mitochondrial Respiratory Chain Disorder. Mitochondria
are responsible for producing 95% of the energy that’s needed for our cells to function so when the mitochondrial cells aren’t working right, the body can’t work right. For this reason they are often referred to as the powerhouse of the cell and they are also responsible for the handling of oxygen in human metabolism. Maintaining an optimal energy supply is critical for Jack’s body functioning, growth and development.

Jack presents with the following symptoms:

His energy levels fluctuate from having ‘no’ energy and being quite floppy to feeling quite ‘normal’ with good general tone to periods of high tone (hypertonia) mainly in his arms and legs. This will depend on the type of activity he is involved in, the climate (indoors or out) and his general health status;

He has global developmental delay that affects his motor planning and development of his fine and gross motor skills; he has trouble with balance and coordination and tires easily.

He also has learning problems associated with delayed language development.

These symptoms affect his entire body and impede his ability to carry out day to day functions without proper support or assistance. Jack participates in regular physiotherapy, occupational therapy and speech therapy as well as attends Conductive Education classes to assist his progress and enhance his growth and development.

Jack is socially alert and cognitively very bright. He is able to understand simple instructions and communicates using his voice to vocalise and/or he will access his communication aids to convey his message.

He loves to interact with both young and old and charms the pants off everyone who knows him. Jack wants what every other kid his age wants. To play in the sand, kick up the leaves and stand up tall and draw on the walls and deliberately splash through the puddles rather than walk around them, just to see what it’s like. He is no different than all the other kids at playgroup – he can be just as demanding and cause just as much mischief given half the chance.

Jack does not carry his own body weight and as such even the simplest tasks such as rolling over, sitting up with his head held high, or standing in his frame require significant effort and coordination and this tires him easily. Jack has had to learn how to do basic things that other children his age assume naturally like chewing food and reaching out with his hands to try and hold onto an object. His very low muscle tone has meant he hasn’t had the strength or the energy to be able to carry out these basic movements routinely or consistently, let alone being able to engage in active play.

Because Jack has to work so hard all of the time, we truly appreciate all of his achievements and we celebrate these no matter how big or small. We first learnt of Jack’s condition when he was 7mths old and were told that it was unlikely he would survive his first birthday; for this reason Jack is a gift and the centre of our world and WE LOVE HIM MORE THAN LIFE ITSELF!

Jack is blessed with fantastic mobility equipment that enables him to be well postured and readily included in day to day activities and this makes the world of difference both (for us as his parents) and to Jack because it means he is not needlessly expending energy trying to remain upright plus do whatever the task may require of him.

Jack is more susceptible to illness than most children because his body uses so much energy just
performing day to day functions e.g. breathing, eating, drinking and sitting upright. We have to be careful to minimise his exposure to possible risk factors as a simple bout of the flu could see him hospitalised and facing a major health battle.

Mitochondrial myopathies and encephalomyopathies are relatively rare and currently there is no known cure. Jack is special and teaches all that he comes into contact with more about patience and determination than a lifetime of ‘normality’ could ever have shown us and that a miracle isn’t winning the lottery but rather the courage and spirit displayed by my little boy who dares to live each new day fearlessly despite all the odds being stacked against him.